The coincidence of date....

Once again, I start my blog post by lamenting the fact that I have, once more, failed in my intention to post regularly. I do mean to post, but I seem to find that I run out of time and, combined with my rubbish memory, this results in me giving myself a (metaphorical) slap on the forehead and uttering a Homer Simpson-esque "Doh!" as I realise that I've failed in my blogging mission.

However, today I find myself in the lucky position of having time and having remembered - this may not be quite so lucky for you, having to read my meandering thoughts!

The coincidence of date - this came to mind on January 13th this year, when Neil, Adam and I were climbing Helvellyn in the Lake District. We had persuaded Adam to come out with us. He's not a natural climber and hasn't taken advantage of being on the edge of the beautiful Lake District by going out and exploring those glorious mountains, so we were really pleased we managed to get him out with us. Hopeful that our day would inspire him to get out and enjoy those hills, we set off in snow and with ice underfoot. For the first hour, he was not too happy but soon he began to enjoy it and was striding forth confidently. Unfortunately, on the way down, he strode forth a bit too confidently, slipped on some ice and landed heavily on his right arm. He had obviously done something to it, as he couldn't bend it and was quite clearly in some considerable pain, so after we got off the mountain, Adam drawing in his breath every time he stumbled on some rough ground and sometimes yelping with pain, we went straight to A & E at Carlisle Hospital. An x-ray later, we were told he might have a fracture at the elbow but it was hard to tell, so he was strapped up in a fetching blue velcro sling and told to return to the fracture clinic the next day. Luckily, it turned out not to be broken, just badly bruised!

January 13th? In 2012, I was having my monthly check-up at the Marsden, not yet officially in remission, and my consultant found a suspiciously soft gland. Long wait for an ultrasound scan and a week later I was told there was nothing wrong. Even so, it was enough to bring back those feelings of helplessness, uncertainty, fear and lack of control I had experienced for so much of 2011 for that week of waiting.

I think next January 13th, I shall remain indoors and encourage the rest of my family to do the same!!
I know, I know it's bad luck to be superstitious, but even so.....

In other news, I am still working two days a week in London - I have really enjoyed this piece of project work. It's been great to use my brain and to feel I am making a difference and I have really missed the office buzz, the conversations while waiting for the kettle to boil, the planning, decision making, thinking process and the opportunity to make suggestions. Two days a week feels about right to me - that, with my one day a week volunteering at the wonderful Orpheus Centre, is about all I have stamina for at the moment.

I find this lack of stamina quite disappointing. I had hoped that, by now, I would be much nearer the stamina levels I had before I got ill.  My friend, who herself is in remission from cancer, had said to me right from the start that it would take two years or thereabouts to get back to similar levels, but I did hope I would get there a bit early! I guess I have to remember that it's only 17 months since that gruelling treatment finished and only about a year since I started eating properly again, so all in all, perhaps I'm not doing too badly. I just miss that sense of having energy to spare, that need to do something to use up the spare energy. Instead, I find myself falling asleep on the train home from work, having almost hallucinations in that half-asleep-half-awake state so that I wonder if I am in some strange parallel universe. I don't remember getting this tired before being ill. Will it get better? I am trying to do the right things. I eat healthily, I exercise regularly, I sleep as much as I can, I drink lots of water - what more can I do?

Still, I'm alive, I'm doing so much more than even 6 months ago and I have my wonderful family and friends giving me constant support. I hope they feel I am giving something back to them too.

Hospital 1, hospital 2 and hospital 3...

As I write this, there's snow on the ground. Not a lot of snow, but enough to disrupt the transport system, it would seem. I don't remember my school closing because of snow when I was growing up (in a place much colder and with harsher winters than the South-East of England) - am I viewing the past through the rosy lenses of nostalgia? Were the summers endlessly long, always sunny and full of laughter? Maybe not, but perhaps my old school friends might remember if our school stayed open whatever the weather - I seem to recall the only days the school was closed was when the teachers went on strike!!

The snow started falling on Friday, as I was driving to the Marsden for my three-monthly check-up. Anxious enough about the check-up, as always, the anticipation of poor weather and difficult driving conditions heightened my nerves. The hospital car park was pretty empty and I did wonder if my check-up would go ahead or whether the doctors would have struggled to get in and I might be told to return another day - not a prospect I relished, as I still have to psyche myself up before the appointment and I would have to go through that process all over again. Luckily for me, however, the Head and Neck clinic doctors had managed to get in, although a lot of patients were phoning in to say they couldn't travel to hospital and the waiting room was much emptier than usual!

Of course, the important thing is how the check-up went, not whether the waiting room was empty. After the usual physical examination of  my head and neck and a look inside my mouth, the registrar pronounced that everything is fine - phew! All it means is that I remain in remission and there is no sign of the cancer returning in that area, but to be honest, that's as good as I can expect and hope for at this stage. It doesn't mean the medics are prepared to give me an all clear and state categorically that I am free of cancer, but it means that I am now a year in remission - pretty bloody good when I think of how I felt for most of 2011 and the thought of being alive in 2013 seemed like an impossible dream.  I can't stop cancer by willpower - if we could, how wonderful would that be? - but I can give myself the best possible chance of remaining healthy by taking responsibility for my health and eating sensibly, exercising, resting and avoiding risk factors. That doesn't mean I don't enjoy life - quite the reverse. It just means I am giving myself the best chance of being able to deal with any health problems that come my way.

The other side of my cancer coin is the facial palsy. On January 3rd, I went to the Queen Victoria Hospital in East Grinstead to have my gold weight (aka "eyelid bling") repositioned and my eyelid lift. I had to be there for half seven in the moring, which meant waking my lovely children in time to drive me there (neither of them was working that day, so they volunteered to take me - good children!). The surgeon came to talk to me before the operation and - to my pleasure - he said he thought I didn't need the gold weight any more and was going to remove it. Yay! He also thought I was a bit allergic to the gold (oh, I am so precious!) so it made sense to remove it. The important thing was whether I would be able to close my eye fully after the weight was removed and if I couldn't, then the next stage would be a platimun chain inserted into the eyelid - rising up the precious metal scale!

Now, nearly three weeks after the surgery, my eye looks much more like it used to BC. While it's not exactly as it was, and not exactly like my unaffected eye, it is far less noticeably different. This is progress. This helps me feel that I look more like everyone else and a bit more like I used to look. It also reminds me that it doesn't have to be all about oncology. A part of me also thinks that the NHS wouldn't be investing all this time and money in addressing my facial palsy if they thought that I was going to be ill again - perhaps this is naive, but it makes me feel better anyway :-) In a flurry of January medical appointment, I also had some Botox around my mouth, so I am all procedured-up.

Part of me feels a bit sad that my year has started with so many medical appointments, all of them necessary because of having had cancer. What a nasty, far-reaching disease it is! But another part of me rejoices that I am still here and enjoying life, that I have so many wonderful, supportive friends around me, that my family continues to be a constant joy to me and that the world contunues to turn. There's much to be thankful for. I am thankful.

And so it's 2013....

January 1st. A new month, a new year.

Last year, I wanted to draw a line under 2011 and forget - or at least try to forget - all the horrible experiences of the year. My little family and I had suffered much over the previous 8 months and I hoped that going to bed (before midnight) and waking up in a brand new year would mean we could leave all that nasty stuff behind us. Well, we all know that there were some ups and downs during 2012, don't we? - starting off with the scare in January (yes, I couldn't even manage one month without experiencing that sinking feeling when the consultant finds something that makes him worried and I trundle down the path of scan - wait -result). Thankfully, it was just a scare, but it did make me realise a bit more emphatically that I can't relax and assume that my body is now behaving properly.

February brought my PET CT scan and confirmation that I appear to be in remission - usual caveats applied, obviously! That took a while to sink in, as I was out of the habit of dealing with good news about my health....however, finally I accepted it and felt that I could move on to focus on dealing with the facial palsy resulting from my surgery.

Good friends helped greatly during the year - Fin, my old university friend, really helped my confidence by taking me on a star-studded extravaganza with a night at the Olivier Awards ceremony. Who doesn't love a chance to dress up in a posh frock and sip with people you are used to seeing on the television, stage or pages of a newspaper? My local and church friends, my running friends, my wonderful school friends, other friends - all gave unstintingly of their time, support and advice to help me adjust to being in remission and learning to be confident again, bit by bit, sometimes one step forward and two steps back. And of course - my little family. Neil, Amy and Adam continued to help me every day, in small and big ways. Whether it's been taking me to hospital for my eye surgery and further check-ups, coming shopping with me, planning and taking me on wonderful holidays or making me cups of tea - they've done it all, quietly and for no other reason than that they care for me and want me to be well and happy.

So I start 2013 feeling and looking much better than at this time last year. I have been out for a run this morning, as part of my plan to be as fit and healthy as I can be. When I think how scrawny and lacking in energy I was this time last year, I can see how much progress I've made. My face has improved and (hopefully) will continue to do so, although it's all very marginal. I have more eye surgery in two days' time, on the 3rd, when I shall have my eyelid bling repositioned and an eyelid lift, no less! I shall have a fortnight of looking as if I have gone several rounds with a prize heavyweight boxer, with bruising, swelling and those little strip stitches that fall off before they're supposed to. This will all be accompanied by some pain and discomfort, but hopefully by the time all the swelling has gone down, my eye won't look so heavy and it will be more like my right eye. Fingers crossed, anyway!

I've still got a raft of appointments in store. My next oncology check-up will be in just over a fortnight and I can feel the stirrings of anxiety as I get closer to the date. I try to tell myself that it's silly to feel like this and that there's no reason to think that the oncologist will find anything wrong, but there's still that nagging doubt and worry. I can sometimes go whole days without actually thinking about having had cancer, but I'm not yet at the stage where enough time and distance have passed that I can relax about it. It still hovers in the back of my mind, waiting to sneak up and catch me when I don't expect it. I'm sure this will get better but not quite yet.

And finally, on this day, I remember Anne, a friend from university who was married to another friend, Fin. A lovely, kind, intelligent, funny and beautiful girl, who died of cancer exactly 10 years ago today. I know Fin misses her every day. Spare a thought for her and for Fin.

Here's to 2013 - may it bring you all  you wish yourself.

The one where we become official!!!

Sometimes weeks go by with nothing special happening, no events worthy of note, just ordinary, everyday life - nothing wrong with that! In fact, ordinary, everyday life is precious to me because I wasn't sure, during my darkest, illest days last year, whether I'd experience it again. Even today, I'm honestly not sure how many ordinary, everyday times I have ahead of me, but that's not something to dwell upon, is it?

This week hasn't been one of those ordinary weeks, though. Since blogging on Tuesday about my beloved Sodbury Slog, amongst other things, I have had quite an eventful few days, starting with Wednesday, when I had a follow-up appointment with my eye surgeon.

You'll remember that in July, I had my tarsorrhaphy reversed and my gold weight inserted. This was my follow-up appointment to see how things are going. We started with a sight test (20:20 or 6/6 as they seem to call it now) and the dreaded pressure test, although it wasn't the puff of air in the eye test they used to do. Instead they put stingy (as in they sting, not that they are mean!) eye drops in the eye to numb it and then measure the pressure of the eyeball with some little electronic contraption. All very high-tech. Anyway, the pressure was perfect so no signs of glaucoma. Then, time to see the specialist.

First I saw one of the junior staff - not sure of his grade, but I think he might have been a registrar. He has been specialising in eye surgery/conditions for 8 years so by my reckoning, he must be at least 30, but he looked as if he'd just left school! Definitely a function of my getting older, I think! I wanted to explain that my eyelid felt heavy and droopy, especially at night or when I read and am looking downwards. It's not that I am ungrateful for what's been done - anything but! - but I felt it better to say how I feel rather than pretend everything is fine. I explained all this to the doctor and he was very understanding and said I was right to say what I felt. He measured my eyes and confirmed my eyelid was droopy and also that my gold weight (aka "eyelid bling" - copyright me!) had moved from the centre of my eyelid into the inner corner of my upper eyelid. He thought this was something that could be remedied, so I had to wait to see the consultant, who always likes to discuss the cases with the other doctor and patient as part of his mentoring and coaching (how good is this hospital? They do things properly!). When I saw the consultant, the first thing he said, once I'd sat down, was "How do you feel? How are things for you?" and I explained about the heaviness and drooping eyelid and, once again, said I didn't want him to think I was being ungrateful after all his hard work. He reassured me that, to him, what's important is how the patient feels and that it's not  his job to tell patients how they should feel but to work with them to get the best outcome. Phew! After some discussion and examination, the outcome is that he is going to pull the muscle forward from behind my eye and reposition my gold weight. Apparently, my blinking is better than about 90% or more of facial palsy patients he sees, with my eye closure at 100%, so pulling the muscle forwards should lift my eyelid and remove the droopiness. Yes, friends, I am having an eyelid lift, just like ageing celebrities have in an attempt to stave off the effects of gravity! And all on the NHS, too! He wants to do it in the next three months as he sees no point in waiting and wants me to feel better about how I look as soon as possible. I've had the pre-assessment already, so now I just have to wait for the date.

How lucky am I to be treated at this hospital? Yet again, I have been treated as a person whose opinion and feelings matter. I've not been talked down to, or talked over, I've been asked what I want the outcome to be. It's quite empowering to be told that your feelings are important in the medical decisions to be made.

I know how very lucky I am to have been treated at the Queen Victoria Hospital and it's really just because I happen to live in this area and I happened to be referred here last year for investigation into the lumps in my neck and it just happens to be the best place in the country for facial reconstructive surgery and associated procedures. Not everyone is as lucky, as is obvious from the statistics about access to treatment for patients with facial palsy. The average wait to access treatment is almost 6 years. 6 years!! - can you imagine living with all the functional difficulties, all the social anxieties and psychological damage facial palsy brings for nearly 6 years, thinking it will never change, never improve? Paralysis of the face brings social paralysis as well, I think. Self-confidence and self-esteem plummet, as I know from experience - and I was one of the lucky ones, with access to physical and psychological support at the earliest opportunity!

Which brings me to today, and the Press Launch of Facial Palsy UK. I've been involved, in a small way, with helping to set up this hugely important charity, the first in the UK dedicated to supporting people with facial palsy. The brainchild of Charles Nduka, my plastic surgeon, it's thanks to his vision and dedication, and that of a number of other health care specialists, including my lovely specialist speech therapist, that this day has arrived. I was one of six people with facial palsy who made short speeches to the assembled journalists, medics and other FP patients. I hadn't scripted anything, as I prefer to speak from the heart; it's more natural for me that way. I wanted to cover the psychological aspects of having FP, including the crippling lack of self-confidence. Well, I started speaking, I was fine, I was even joking about how I didn't look much like the photo on the screen of me before I developed FP - and then I started talking about how I had struggled with feelings of no self-confidence and that I had kept saying to Neil "Don't leave me, don't leave me" and that I felt ugly - that's when the tears started. I wanted to say that I mourn the face I've lost and that I miss it. I think I just about managed to blub the words out! It was a bit unexpected, but actually, it was probably the best thing I could have done, because it demonstrated very visibly the impact that FP has on people. For me, there's the double whammy aspect that I can't easily separate the FP from having had cancer, because whenever I look at my face, it reminds me that I only look like this because of that nasty, evil disease. It makes it hard to forget.

However, I would like to record my pride that I managed to make the journalists and the medics cry too! That's quite an achievement <beams lopsidedly with pride>. I had a nice chat with one of the professors during our tea break and he was very sweet about it, saying it was the best thing I could have done because it was obvious I spoke straight from the heart. In a "small world" moment, one of Amy's professors from uni was there - she is a professor of the psychology of visible difference  and Amy did her dissertation on this - so I had a chat with her too. One of the questions during the Q&A session was asking how we dealt with the psychological aspects and I had spoken of the importance of returning to running and exercise and how it was about ticking another box in the checklist called "Normal", and the Amy's professor was in total agreement, so we had a good chat about that. I also had a photo opportunity with the very lovely Colin Salmon, whose wife has facial palsy. She is a trustee of the charity and he is a patron.

The media do seem to be picking up on facial palsy - we had someone on BBC Breakfast this morning, there was an article on Five Live, something on newsbeat and one of our members will be appearing in the Mail on Sunday shortly. This is all brilliant publicity for our charity but we need to continue to generate publicity - and funds! Having facial palsy isn't cosmetic - it's functional, it's emotional, it's psychological, it permeates all aspects of your life, sometimes in the most unexpected ways, like believing that you can't drive, which happened to me. This is not about looks-obsessed people wanting to look perfect. This is about being normal.

All of us today appreciated the support and love of our families and friends. I hope you all know this!

Old friends, new charities and same old anxieties!

I have often been struck by the way in which my daughter and her friends, when teenagers, and indeed many teenaged girls, are so much more affectionate and open in their feelings than I remember being when I was at school. Lots of declarations of "Love you" and hugs, kisses and more hugs seem to be the order of the day when greeting each other or saying goodbye nowadays. When I was their age, we didn't even hug each other, let alone give voice to any feelings of love or affection. Why was that? Were we worried that we would be mocked for being open in our feelings? Worried that perhaps our words might be misinterpreted and our sexuality questioned? - this was the 70s, remember, when the common expectation was that everyone was heterosexual and we weren't confident enough to want to be thought of as somehow different? Whatever the reason, we just didn't do anything more openly affectionate than maybe writing "Loadsaluv" in a Christmas or birthday card, as if spelling it in a jokey way meant it couldn't possibly be viewed as anything other than a whimsical, throwaway sign-off.

Interestingly, in recent years when I have met up with, spoken to or been in written contact with my very old school friends ( from my old all girls school), I've found that my closest friends and I often sign off with "Love you", either face-to-face or in emails. Is it because we are more confident now that we can say these things without fear of being mocked or thought of as overly "touchy feely"? Or is it because, being older, we are more aware of the preciousness of  good friendships? The kind of friendships formed when you are in your early teens are perhaps particularly special because we were all growing up at the same time, facing the tsunami of puberty, beginning to form our own opinions rather than believe everything our parents do, thinking of our futures and what we wanted from life and making that most tricky of transitions from childhood to young adulthood. Whatever it is, there is some bond there that seems to be pretty much unshakeable, even if we don't see each other for years, sometimes decades and which means that, as soon as we do meet up, the years just roll away and that closeness, that warm support of each other is as strong as ever. Maybe it is even stronger now, as we have all faced our own battles over the years and emerged bruised, a bit fragile but still strong in our friendships and belief that we will continue to be friends.

These feelings all manifested themselves when I met up with 11 of my old school friends a fortnight ago at a small, but perfectly formed, reunion of the class of 1970 - 76 from the Glasgow High School for Girls. We had a huge reunion two years ago, with around 50 of us meeting for a ceilidh, a few  meals and a good old blether; it was such fun that we decided that we would try and have a meet-up once a year, even if it were only a few of us. I obviously couldn't make last year's meet-up, so I was particularly keen to go this year. I combined it with a sleepover at Adam's place in Carlisle, so I got to spend some time with him. As usual, I was anxious at the thought of seeing people - only three of my friends from school had seen my new face and, while my head was telling me that it would be fine and that these were all people who had been hugely supportive in their comments on Facebook and in emails to me, my heart was saying "It's going to be horrible, they'll stare at you or if they don't stare at you, the other diners in the restaurant will stare at you". I so wish I could stop these feelings surfacing every time I anticipate social events. I had hoped that, with time and given that my face does look so much better than it did at the beginning, my confidence would have given chase to the worry but it doesn't work like that. I confided in one of my friends, Fi, about how I felt and she understood exactly and, in fact, said that others had been fighting their own battles of one kind or another, so there would be nothing but support and warmth. Of course, she was right. We had a wonderful time and I even felt okay about having my photo taken, perhaps because a couple of glasses of Prosecco relaxed me to the point where my usual fears about being near a camera disappeared.

Strong, feisty, funny, caring and intelligent women - it was wonderful to spend time with this group of friends. We're already planning next year's reunion and thinking big: we're investigating renting a big house/small castle for the weekend so we can really let our hair down and not be constrained by restaurant closing times or last trains.

My trip to Glasgow was sandwiched between visits to Adam. He gave up his bedroom for me, being a dutiful son, so in return I made him and his flatmates a couple of lasagnes, a chicken casserole and a Sunday roast, being a dutiful mum! It was good to see him and spend some time with him. University life seems to suit him.

This weekend it is my favourite race - the Sodbury Slog. It's a cross-country race starting and finishing in Chipping Sodbury and of variable length, depending on which farmers have given permission for their land to be crossed, but normally around 9.6 miles. And muddy - you have no idea how muddy! There will be a stream we have to wade through which, on normal sized people, will be about knee high but on me will be about thigh high, if not higher and which we have to climb out of, hauling on a rope to help us up the slope - that will be quite a test of my dodgy shoulder! It's the most fun you can have with your clothes on and I was so disappointed to miss it last year. Once again, this is another box to be ticked in my return to normal. I've got my usual room in the hotel where a bunch of us always stay the night before and we will take over the local Italian restaurant after the race for lunch. I'm looking forward to it but with my usual sense of gnawing anxiety about how my face will be received. Yes, I know it's silly and that I will be amongst friends, but I just can't help it.

Before that, though, I have my Institute's Regional Annual Dinner at a posh hotel in London. It's a great event and you might remember that last year Neil and I were invited as guests of honour. It was quite a difficult evening for me for the reasons you all know: showing my face when it was so much worse than it is now, still suffering the after-effects of radiotherapy, unable to eat and feeling constantly on edge about how I appeared to people. This year should be so much better, but there's still that unease about my face. This year, however, I have been asked if I would like Facial Palsy UK (the charity I have been involved in setting up) to be the charity we support with our raffle over dinner, so of course I said I would and offered to say a few words about it so that people know what they're actually supporting. We're a little known charity and, let's be honest, not many of us know anything about facial palsy - I certainly didn't before I got it! Spreading the word about the charity and the condition will be invaluable so it's important that I make it personal by talking about what happened to me and how it feels to have FP. So I shall be standing up in front of over 200 people and talking about my experience. It feels a little bit daunting but it's important to do it. In  a piece of good timing, there was an article on the BBC website about living with Bell's Palsy, so at least some of the people there tomorrow might know something about some aspects of facial palsy. Did any of you see it?

 http://www.bbc.co.uk/news/magazine-20206297 will give you an insight into what it's like. If you look at the photos of the woman who chronicled her recovery (Bell's Palsy is, for the vast majority of people, a temporary condition from which they will make a full recovery), my smile is now at about the stage of her photo on the extreme left of the third row down. However, I started from a much worse position than she did, as my cheek was actually hanging down on the left-hand side, so that helps me see how much improvement I have had. I'll never get back to what I was before but at least you can now see a bit of a smile on the left side of my face.

Next week, we have the press launch of our new charity so look out for coverage in newspapers and magazines after Friday 16th.

Signing off now, with my usual thanks and love to the people who help me get through every day and every week.

The constants in my life

 Flashback - September 2011. I am one week post-radiotherapy and sinking to a new low, both physically and mentally. I can't eat without being sick, my neck is bleeding, my mouth is painfully dry, I feel sore, I am exhausted. What better thing to do, then, than go to a black tie dinner? It sounds mad, but this was no ordinary black tie dinner - this was the CIPFA South East Summer School, an event so dear to my heart and where I have made some of my closest friends, so not going wasn't an option, really. I blogged abbut it at the time, about how bittersweet it was to be there, feeling lousy, looking at my worst (although gratifyingly skinny, for the first time in my adult life!) but surrounded by the love and support of some wonderful people.

Come back now to 2012 and this year's Summer School, where I was able to play a full part - I had energy, I had enthusiasm and I felt like a different person (albeit not quite as skinny as last year!). I can't describe just how wonderful it felt to be part of it all again, not sitting as an invalid, unable to do anything, not even to eat. I might not have stayed up as late as I would have BC, but I'm still recovering fitness and stamina, so that ought to improve. For me, one of the major things is that I didn't feel as self-conscious about my face as I did last year, or even a few months or weeks ago. I confess to a touch of nervousness on the eve and morning of my departure for Summer School, but - as ever - my lovely husband told me I look great and that there is no need to worry. Of course, he was right. I genuinely don't look nearly as obviously different as I used to (although it's noticeable when I talk or smile an open-mouthed smile) and, in any case, I was going to be with friends. Most of the delegates at Summer School were people I knew and any newcomers would hopefully be as accepting as my friends were.

And so it proved to be. We had chosen Facial Palsy UK (the new, about-to-be-launched charity I am involved with, providing support to people with facial palsy) as the charity we would support during summer school. This is a practice we introduced a few years ago and it has allowed us to support a range of charities to the tune of several hundred pounds each year. I made a brief speech about the charity and why it was so important for people like me, with our wonky faces, difficulties in eating, drinking and speaking and our inability often to express emotions and take a full part in social interaction. I feel so honoured that, over the course of two days and with a small delegate group (the recession bites again!), we managed to raise over £400 - a magnificent amount, and I am so grateful for the generosity of our delegates.

One of the challenges for a fledgling charity is that no one really knows about it, so we have to publicise it at every opportunity. A couple of months ago, I emailed the Chief Executive of the hospital where I received my diagnosis, had my surgery, physio, speech therapy, eye operation etc etc to say how impressed I was with the treatment and care I had. To cut a long story short, I was invited to be interviewed for a BBC South East local affairs programme, to be broadcast either later this month or in October. After exchanging emails with the journalist, we arranged a date for me to be interviewed at the hospital. Who knows how much of what I said will end up on the cutting-room floor, but I managed to get in some mentions of Facial Palsy UK, which I hope will help raise the profile of our charity. For those of you who can receive BBC South East, the programme is called "Inside Out" and the feature is around cancer care in the area.

Neil and I had 9 days in Spain, at the end of September. We had intended to do lots of walking, climbing and generally be very active, but in the end, we did far less than expected and just relaxed instead. I know, hold the front page! We did still manage a 36 km bike ride and a couple of long walks, but mostly we pottered around, enjoying the pueblos blancos, the tapas and the manana approach to life. We ended with two days in Seville, arriving just as they had their first rain following 7 months of dry sunshine. It wasn't just any old rain, it was torrential rain - we had to go back to our (very charming, quaint) hotel twice on the first day to change out of our sodden clothes and warm up in the bath and shower! Still, we managed to see most of what we wanted to see, including a flamenco show. Ever been to one? The dancing was what I expected, but the singing - oh my! That was a bit unexpected..very guttural, no obvious link between the beat of the guitarist, the singer and the hand-clapping and very LOUD - which I suppose it has to be to be heard over the stamping feet of the dancers! We really enjoyed it, after the initial surprise at the vocal element.

And so back to Britain and more rain...at least now we are well and truly in autumn now, I can wear boots at every opportunity. This, to my mind, is one of the few good things about living in a temperate climate where the seasons change. I get to wear boots.

This week has included an appointment with my speech therapist. She has given me permission to stop zapping - yay! No more electrodes and shocks for an hour every evening. Instead, I have more massage exercises and a specific exercise to help me with my "whistle" - pursing the lips. I mentioned to the therapist that I hated not being able to kiss properly - when your mouth doesn't purse properly (that sounds a bit weird!), effectively you become a passive participant when someone kisses your mouth. Also, it is harder to spit (I'm not a gobber, but you do need to spit when you clean your teeth and I find it quite difficult!) and, as I discovered at Summer School, I can't blow bubbles with a bubble wand either (it was all in the cause of our group presentation, honest!). It's a reminder that things still aren't back to how they were BC and they're never going to be. However, I have to continue to work at what I can to get maximum improvement.

And so to today, and my first visit to the gym in several weeks. I really need to start being more disciplined again about my exercise regime, especially as the weather is now of the kind that is likely to pull my mood down. I am not good with rainy, overcast, dull days and it looks as if we are in for quite a lot of them. I was disappointed not to get a place in the ballot for the London Marathon next year (again. I never have any luck in the ballot) as I was hoping to run for Facial Palsy UK. I think I will support instead, although some people are trying to persuade me to run Brighton marathon instead. I think I might pass on that one!

Check-up at the Marsden in two weeks and already I can feel some slight anxiety, which I know will increase as I get closer to my appointment. Three months feels like an awful long time for things to go wrong, but I need to try and be more trusting in the medics and their judgement that I don't need to be seen more often. I do trust them, but these niggling, anxious little voices just keep whispering in my ear and it's not always easy to silence them.

To end on a happy note - last night, I attended the book launch for "Grace Under Pressure", an account of how running helped Sophie Walker deal with her daughter's Aspergers and what it's like to live with a child with Aspergers, with all the challenges, difficulties and delights it brings. I was Sophie's babysitter when I was a student and her parents and younger sisters were both there (I babysat one of her sisters too) - and, in one of those weird coincidences, I ended up working for the man who is now Sophie's husband a few years ago, without knowing anything about their relationship until it emerged during a conversation worthy of a Ionesco play!. It was great to meet up with her family again. Although I saw her parents, Dave and Lesley, a couple of years ago, we hadn't met since my somewhat tumultuous 2011 and I hadn't seen her younger sister, Cathy, for nigh on 30 years, although we are in touch through Facebook. I felt a warm glow, talking to them all (and no, don't blame it on the wine, because I was drinking water!).

Family, friends, exercise - three constants in my life.

Just over half of Seven Sisters....

It's been a fairly quiet week since my last blog. That's not a bad thing, actually, since I was pretty busy the previous week, with shopping, wedding, gym etc and this week is starting to get more filled, so it was probably good to have a bit of a lull.

I took my glam frock to be altered so that I don't trip over it when I am at the Olivier Awards (oh, have I mentioned I am going to those? I'm sure I must have, a few times at least.....!). The rest of the week was spent doing domestic stuff, chatting to Adam about uni and just pottering around. I have discovered a great talent for pottering around over the last few months. I can while away most of the day doing a bit of tidying here, some cleaning there, a little light dusting over there, a bit of reading, catching up with missed episodes of Corrie - it's easy to fill the time!

The only thing we had planned for Easter was to go walking on Saturday with our friend Jonathan. We have done a lot of walks with him over the years (he climbed Kili with us and has climbed various other big hills with Neil) and had arranged this a few weeks ago. We drove down to his house and then on to Seaford, where we started our walk. We did 18 miles (a bit more distance once you factor in the elevations), including four of the Seven Sisters - hence the title of this post! We had to take off our boots and socks and roll up our trouser legs to cross the river. I believe the water was what you would call "bracing" - we called it flipping freezing (one of those words may have been sanitised for public consumption....).

Our walk included a pub lunch, a cup of tea in Alfriston and coffee and a hot cross bun back at Jonathan's house, so we were in no danger of going thirsty or hungry. Back home by about 9 o'clock and both of us were pretty tired by our day. I also had a little blister on the pad of my big toe - this is officially Not Good, as I need to get rid of it before VLM day, so I had to prick it (apologies to those of you with needle phobias, but sometimes it's the only thing to be done!).

On Sunday, I was reading at church and had also arranged to make an announcement before the start of the service asking for sponsorship for VLM. People were so generous and I raised another few hundred pounds, so I am able to pass over a respectable amount of money to Macmillan Cancer Support. I am humbled and thankful for the generosity of so many people, not just in terms of financial support for Macmillan, but for practical and emotional support over the past year and continuing now, as I start to gear up for the start of work on my face, beginning with my first Botox treatment next month. I tell you, I am going to end up looking younger than my peers :-)

I arrived home from church and my baby brother had arrived - he is visiting us for a few days. We don't get many opportunities to spend time together, so it's great having some time to chat or just sit watching Who Wants to be a Millionaire, which is what we're doing right now! We had a traditional Easter roast and were joined by the young lad whom our son is working 1-2-1 with this week. He is non-verbal autistic and an absolutely beautiful, delightful boy, even if he is very tiring and demanding to care for. It was good to have our family all together again for a meal, with the addition of my baby brother and this young lad.

We didn't really do anything on Easter Monday - weather pretty shabby, so a walk or bike ride were out of the question. We called round to see our friends, played with their puppy (no, not a euphemism) and then came home for a Quiet Night In.

Today, back to exercise - I have missed it over the past couple of days and, because I hadn't done a lot last week, was feeling a bit lardy. So, today I have been to the gym, a Zumba class and Pilates this evening. I feel much better for it too.

And so to now, and we are about to watch a programme on BBC2 about the Royal Marsden Hospital, where I was so well cared for last year. I'm not sure how easy the programme will be to watch, whether it will remind me of a difficult and distressing time, but I do feel it's important to watch it. They do wonderful work and it's good that people know about them.

The one with the posh frocks and the wedding....

I'm sitting in the conservatory, sunshine streaming through the glass and warming me up. Lady Sybil (cat) is asleep on the other armchair, basking in the heat and dreaming feline dreams.

My positive, happy streak continues. On Friday afternoon, Amy and I drove through to Tunbridge Wells to look for a glamorous frock for me to wear to the VIP event I have been lucky enough to be invited to by my old friend from uni, Fin. He has invited me to be his guest at the Olivier Awards at the Royal Opera House and at the after-show party as well, so I shall be engaging in some major celebrity spotting, probably looking completely star-struck as I recognise faces that have been on my tv or film screen over the years.....I shall try to preserve some air of sophistication, an attempt to be very cool about the fact that I am breathing in the same air as the elite of London's theatres, but I can't imagine I will be very successful! Anyway, as you can imagine, a glittering evening demands a suitable dress. While I have some lovely posh frocks, they are all too big for me now and it's important to feel you're looking your best, isn't it? I was recommended a vintage clothes shop in T Wells, so off we went to have a look at it.

It's strange how calling something "vintage" somehow makes it sound less like second-hand, which is, after all, what it is! It's not much different from buying clothes in a charity shop, just a different price range and designer labels rather than high street names. The woman who runs the shop was really helpful - we explained what the occasion was and she asked me what kind of dress I wanted and then picked out several dresses for me to try on. I had gone in thinking that I would get something quietly under-stated and subtle (no point in trying to compete with people who are given gowns for the evening by designers desperate to have their creations featured on the red carpet, I feel!) but in the end, I came out with something quite the opposite! As soon as I put it on, I knew it was the one to get and Amy and the shop owner agreed. It capitalises on the fact that I am slimmer than I've ever been and just makes me feel like a million dollars. It needs to be shortened, as at the moment I trip over the hem, being a bit of a shorty! It's been worn once, for a photo-shoot for a magazine feature, so the model would have been typical model height and considerably taller than I am! I also need a couple of stitches to protect my modesty, as it presents a certain corsetry challenge, shall we say?? It's a beautiful dress and needs very little accessorising, so no need for lots of jewellery. I've got the perfect shoes and bag to go with it, so I just need to work out how I shall wear my hair and do the other various grooming routines. I'm so glad I had my make-up session at the Marsden last week, as I definitely feel more confident when I have made up my face.

Amy got a beautiful dress, which she shared with everyone on Facebook - a great bargain, as it is a David Emanual (of Princess Diana's wedding dress fame) with the tag still attached and we got it for a phenomenally low price. She wore it to the wedding we went to on Saturday, when Neil's oldest nephew got married. That was a lovely occasion - seeing two people making that commitment to each other and being part of their very special day is such a privilege. It was great to catch up with Neil's family too, who had gathered in Luton (bride's home town) from their homes in Devon, Suffolk and Hampshire. Amy and Adam were a great credit to us and we were very proud of them - Adam spent a long time talking to the bridegroom's grandma (no blood relation to us), who didn't really know anyone except for her son, daughter-in-law and grandchildren and he really looked after her and afterwards said  how much fun he'd had chatting to her. Meanwhile, Amy got her cousins up onto the dance floor and was the leader of the energetic dancing! Adam got up to join her and it was so lovely to see the two of them laughing together and having fun with their cousins. Adam had only got home from uni at about half eleven the previous night, so we were delighted to have him back again and have our little family unit complete once more, even if he's only home for two weeks.

I had volunteered to drive us home from Luton, since Neil doesn't often get the chance to spend time with his family and he spent all of last year ferrying me around, so I felt that he should have the chance to have a couple of beers if he wanted and not have to take the responsibility of driving us home. I did start to flag at about half nine but it took another three quarters of an hour to get our children off the dance floor, as they were having such a good time, leaping around and "busting their moves", as I believe the young people say nowadays <old gimmer emoticon>.... The drive home was fine and was the farthest I've driven in over a year, so that's another milestone achieved.

Quiet day on Sunday, church and then lounging about reading the Sunday papers and cooking a roast dinner - how lovely it was to be sitting all together round the table again! Adam went out in the evening to catch up with his friends (he is working all over Easter at Disability Challengers playscheme and also doing 1-2-1 work with a young boy with severe autism, whom he and Amy have worked with for several years now, so won't have that much free time to see his mates) and Amy, Neil and I played a board game.

Today, I've been round to my friend Sally's for tea and birthday cake, as it's her birthday today. I absolutely love my life right now - I feel healthy, I have my lovely family and friends around me, I am starting to give something back by helping out at Orpheus and I feel altogether more positive about things than I have done in a long time. Yes, it's sobering to remember that a year ago yesterday, I had my biopsy and, looking back, the fact that the doctor went straight for a biopsy rather than a fine needle sample should have started some alarm bells ringing, but that's what hindsight does for you! Four months ago, I couldn't see that I would ever have any energy again, yet now I am exercising on a regular basis and finding more stamina every week.

I'm alive and I'm grateful.

Agatha Christie, Jane Austen, Laurent Perrier and other famous names....

Why, you may ask, have I listed several well-known names as the title of this blog entry? Have patient, dear reader - all will become clear!

Let me start with Tuesday, when I completed my second volunteer stint at The Orpheus Centre. This week, I was working along with another volunteer and together we were helping one of the students complete their work experience log. You will understand that I have to be circumspect about giving names of students, so I shall refer to this student as S. S has cerebral palsy, with very little speech and spasticity in her arms and legs. She is a wheelchair user and her main method of communication is with the help of an ingenious little book which uses pictures and symbols to work from a main menu down to individual words, based on categories. S can nod or shake her head, or maybe blink, to show when we are at the right picture/symbol. By using this, we were able to help her complete assignment sheets about her work experience. While physically limited, S has an intelligence with shines through when she communicates and she can show very clearly that she understands and is interested in what is going on. Both the other volunteer and I felt that S had taught us something, as we learned to use her communication book and she was really patient with our fumbling attempts to move smoothly between the pages and reach the word she wanted! She had been skiing recently and we were looking at the photos of her on her adapted ski-chair - fantastic that it's now seen as natural that people with a disability can take part in things like skiing (and long overdue, too).

After our morning session, we ate lunch outside and some students joined us. While many of them go to their flats for lunch, some will eat in the cafeteria and there are day students who don't have accommodation to go to, so they will eat there too. I like chatting to the students and finding out more about them and what they think. They like finding out about us too, and of course, they're very interested by the fact that Amy works there and I am her mum! To be honest, I think that interests quite a few of the volunteers too :-). We had an interesting discussion about the responsibility of choosing a name for your child and whether you should choose something that is "different" or stick to tried and tested (names and/or spellings!). After lunch and self-directed study, when I helped the student I had been working with last week to complete more of her work experience record, we went to the Barn for some of the groups to demonstrate what they had been working on this term. It was a real insight into the variety of activities and the different talents and skills the students have. We learned about the enterprise work of one group, growing and selling vegetables and the different dishes they cooked with their own ingredients. We also heard some of the experiemental music group's work, which was a really diverse set of pieces, with really personal interpretations and insights. I come home from my time there with a lighter heart and a smile on my face - the students and staff are really inspirational (a word that is a bit over-used nowadays, but which I think is entirely appropriate in this instance).

Following Pilates, my lovely hairdresser came round to wash and dry my hair because yesterday (Wednesday) I went, along with T (hairdresser) and four of her friends, on T's "hen day". I can tell you that there wasn't an L plate, pretend veil or set of wings to be seen, because this hen and her chicks did something totally different to the usual "dress up, be silly, get trollied" outings that seem to be splashed all over our town centres (and tabloid papers) on a regular basis. Instead, we dressed up smartly and went to Bath on the Orient Express!! What an experience!! For sheer opulence, glamour, old-fashioned sophistication and luxurious surroundings, all wrapped up in superb service, this is second to none. All the staff, in pristine uniform and universally smiling, friendly and polite, could not do enough to make us feel special. We were shown to our seats, our jackets placed on the racks above us, heavy bags stowed away and our chairs pushed in as we sat down. Our "main man", Artur, introduced himself and said that whatever we needed, we only had to ask him - and then he proceeded to pour us each a Bellini (my kind of start to a train journey!). We were then served (silver service) a freshly-cooked and delicious brunch; smoked salmon and caviar, scrambled eggs with chives - the works. After plenty of tea and coffee, Danish pastries etc, we had the chance to view the train. It was well worth walking the length of the train and seeing the different styles of Pullman carriage - they are all named individually and have their own theme and history. Our carriage was Cygnus and there were swans incorporated into the decor, including a mosaic on the floor of the loo! One of my great heroes is Winston Churchill and I was particularly pleased that Cygnus was one of two carriages on our train which was part of his funeral train. That sounds like a strange and possibly morbid thing to be pleased about, but it made me feel some sort of connection with the great man. I get the same feeling living near his home at Chartwell - he must have walked down, or (more likely) been driven down the same roads that I use sometimes.

We arrived in Bath to blazing sunshine and were taken on a tour of the city by bus, including the famous Crescent, and then T had arranged for us to see a demonstration of glass-blowing, with the chance for us each to blow a glass bubble. That was a bit of a challenge for someone whose mouth only half-works, but I managed to create a fairly respectable, if weirdly shaped, bubble! T is the most sweetly generous and kind person and had arranged for us all to have an amount of money to spend in the glass work's gift shop, in addition to subsidising the cost of the day (I told you she was generous!) so we had fun choosing what to purchase. I chose two lovely turquoise-coloured wine goblets, as I thought they would be totally suited to sipping a pre- or post-prandial drink in the garden over the summer....assuming we have decent weather and that this current spell of warmth and sunshine isn't all we get this year!

After this, it was time to return to the station to catch the train home. That makes it sound like a daily commute, but it bears no resemblance to the London Bridge-Oxted service except for the fact that it runs on the same gauge track! A glass of champagne for each of us once we were seated set the standard for the journey and we enjoyed a superb four course meal, with wine and champagne (again, generously provided by T) and, as the wine flowed, so did the conversation! I really enjoyed meeting T's friends, all of whom I met for the first time yesterday, and I really did feel that I made some new friends and that we will keep in touch. That's a good feeling, isn't it? I like the thought that we can gather new friends as we go through life and that our friendship bank account can increase its balance. I've had a couple of debits to my friendship bank account over the last year, as I've mentioned in previous blogs, but a huge number of credits, so overall, I'm in a healthier fiscal friendship position than last March (if that makes any sense at all!).

The journey home just whizzed by - doesn't time always fly when you're enjoying yourself? - and all too soon we arrived back at Victoria and returned to normal, catching the train back to Oxted, where T's soon-to-be husband was waiting to drive us all home (he's lovely too!). I was full of my trip when I came home, babbling on to Neil and Amy, who were *enjoying* assembling a wardrobe for Amy's new bedroom....... I was very pleased that I managed to drink some champagne on the way home (I tried a sip of the very nice red wine, but it still tastes like vinegar to me), as it felt like I was just the same as everyone else, enjoying a little drink. And yes, I did enjoy it!

Today was the last meeting of my Lent group, which I have been hosting at our house for the past five weeks. It's a great little group, from across several of our local churches, so we have different denominations represented, and we have all been interested in, and respectful of, each other's views and beliefs. To close the session, we had decided to have a simple lunch together, so I made some soup and we had that with bread. Our theme today was Communion, so it seemed appropriate to "break bread" together. I have felt very blessed by my little Lent group and the trust we have all placed in each other to respect our thoughts and beliefs. They very kindly bought me and the Leader of the group a beautiful plant in a basket as a thank you (totally unnecessary, but very sweet of them) and the Leader had also bought me one, so I have beautiful colour in my sitting-room. I'd suggested that instead of people bringing things for lunch, I would provide it and people could make a contribution towards Fairtrade, which is supported by all the local churches, so we have a nice little sum to hand over to them.

I did have to take some photos today to renew my passport and I have to be honest and say that I found it difficult to look at them. I think that, like a lot of people, what I see in the mirror isn't necessarily how I look to other people and how I look in the mirror is definitely not what I see when I look at my photos! However, my passport expires soon (so does my MOT, but that doesn't need a photo!) and I do look different from my old passport photo, so have to have a new one done. If/when I end up having facial surgery and I look different again, I can always apply to change the photo at that point, but in the meantime, I have to go with how it is now. I suspect that if I had had to take these photos six, or even three, months ago, I would have been quite upset. Now I can almost shrug my shoulders and say "Well, that's how I look, so just accept it". I think that is progress.

Overall, my positive streak continues. I'm doing lots of lovely things and generally feel happy and strong. I think a lot of this is linked to this beautiful weather, so I'm not looking forward to the change this weekend...we are going to a family wedding on Saturday and, while I'm sure the bride and groom won't care about the weather, I can't help feeling that it's a bit disappointing that the temperature is going to drop by about 9 degrees and the gorgeous sunshine is going to be covered by cloud! Adam comes home from uni tomorrow, so my little family unit will be complete for a couple of weeks and I am really looking forward to that - and on that happy note, I shall sign off!

One year since it all started.....

Ha, so much for my seven consecutive days of blogging - I ended up with a stinking cold and wilted, like a flower without any water.......just had no energy, spent most of the day coughing and pretty much most of the night doing the same, to the point where my ribs ached and I tried desperately to hold the cough in just to avoid feeling that horrible stabby pain, eventually having to just give in and cough away, one hand clutching my ribs and the other in front of my mouth!

You'd think, after all my body has coped with over the past year, that a cold would be something I could take in my stride, wouldn't you? But no, it knocked me for six. I suppose that might mean that my immune system is not yet back up to full speed. Of course, this meant no exercise for several days, so I am feeling a bit antsy and fed-up about that. Back to the gym tonight to an aerobics class, which I hope to manage without having to stop for a coughing fit - if I can do that, I know I am on the road to full recovery.

Talking of all my body has dealt with over the past year brings me to another reason why I haven't posted. On Saturday, the 17th of March, it was exactly one year since I first felt the lumps in my jaw and thought that something wasn't quite right. Little did I realise then just how big an impact those two little lumps would have. This time last  year I was blithely thinking that I had some kind of infection and my glands had swollen up to fight it - yes, unusually only on one side, but I didn't think that was anything untoward. I do tend to think of events as "BC" or "AD" - Before Cancer and After Diagnosis, as if finding out I had cancer caused a seismic shift in my world. Did it? An interesting question - I look at my life and so much of it is the same: same husband and children, same friends (for the most part - one or two whom I thought would be more actively interested went very quiet very early and have stayed that way and conversely, some people have stepped up to the plate and proved themselves to be trusty companions), same house, same lifestyle, same interests....when I look at it like that, not much has changed.

And yet......I feel changed. I feel - I know! - that my approach to life has altered. I feel that, having been given what to me I can only describe as a second chance at life, I have been given the most precious gift: time on this earth. That fills me with such a deep appreciation and thankfulness for all the wonderful work of our NHS and the love and support of my family and friends that I hope I never take any of them for granted again. I feel that I have a renewed appreciation of the simpler things in life, too - I have found such gentle pleasure in listening to birdsong, watching our cats move from one sunny spot to another as the sun moves around the garden, seeing plants and flowers change over the seasons. Nothing sophisticated involved, just nature doing what she does. I don't feel that material things are as important as once I did - yes, I am lucky that we have a nice house in a beautiful area, but I am not fussed about having a newer car or the latest trendy kitchen/garden/technology "must-have" (although I have to confess to having upgraded to the iPhone 4s - I never said I was perfect!!). I have realised that all that really matters is health, family, friends and love.

I make no apologies for sounding like a mawkishly sentimental Pollyanna today. This is how I feel. I've had a lot of time to reflect on life over the last year and although this time last year I had no idea of what a bumpy ride I was going to have, it became clear within a few weeks, so I had to get used to this new set of realities fairly quickly. I think that, on the whole, I've coped.....okay. There have been bad days and there have been good days. In recent months I have had more good days than bad and I know that I have effective coping strategies for the bad days.  When I look back at what's happened to me and my family over the past couple of years, we've coped with my brother dying at the age of 47, our daughter travelling to some of the most dangerous parts of the world, my diagnosis and treatment, my mum being sectioned and then moved into a care home after being diagnosed with dementia - that's quite a list of things. The important thing is that we have coped and we will continue to cope with what happens next. The only thing we know for sure is that I will have more surgery to my face. As for the oncology side - my latest check-up, on Friday of last week, was fine and that's all I can be sure of. I am as healthy as my last check-up. At the moment, the gap between appointments is one month, but I am hopeful that this will gradually be extended as I (fingers crossed) start to have consistently clear results from the physical examinations.

While this blog post contains a lot of looking back, there's a lot of looking forward too. I think that's how I am living my life at the moment - reflection, processing, anticipation and hoping. Is this so different from everyone else's life? I suspect not.

Blogjam....

Facing up to things (see what I did there?!)

..or, learning to live with a new reality after a cancer diagnosis and treatment.

Friday, 9 March 2012

I really must discipline myself (no, I don't mean self-flagellation, in case your minds were working overtime...); I really must discipline myself to update this blog more regularly. If I don't do this, I forget what I've been doing and how I've felt and when I do get around to blogging, it's a veritable torrent of words. I've decided to set myself a challenge - I am going to blog every day for a week, to get myself into the habit of doing it and in the hope that it will become part of my daily routine.

So, since I last posted, what have I been up to? Quite a lot, actually <hasty consultation of calendar to remind myself>....I've been picking up some of the activities and interests I have distanced myself from over the last year. Now that I feel so much better and have more energy, I think it's time I started returning to things like volunteering for my professional institute and getting more involved in church and community activities. It's good practice for the return to the workplace (not that this is looking likely anytime soon, as there doesn't seem to be much work around in the public sector - I wonder why this might be? ;-/).

Over the past few weeks, I've been up to my institute HQ in London twice, to different meetings. It feels good to pick up these interests again, but interestingly I have noticed that I am developing more challenging behaviours - questioning things a lot more and trying to bring more realism to my view of what's going on. I wonder if this is a function of being ill - am I subconsciously thinking that I haven't got time, or inclination, to pussyfoot around things? I don't know, but it's quite an unexpected development. I'm also more challenging of other things, like bad manners, -isms, etc - that's not to say I tolerated these things before but I wasn't always in the habit of saying something out loud (probably this reflects badly on me and my cowardice), whereas now I feel much more gung-ho about things.

Of course, going to meetings in London means travelling on public transport. I still find it difficult and still anticipate that I am going to get stared at - not so much on the train from our local station into London, but on the underground and on the streets. I do need to be careful about this, because what I suspect happens is that I give off signals of being self-conscious and nervous and that will often attract attention because it's more obvious that I feel I have something to be nervous about. I need to remember that London is a great big melting-pot and that most commuters are very used to people who look/dress/sound a bit different and I am nothing that special to them! I went up to London on Monday and Tuesday of this week and, while neither of these trips meant a whole day in London, by the end of Tuesday afternoon I felt exhausted. I think this was partly because the worrying and nervousness about travelling make me tired and partly because, on both days, I was seeing people who hadn't seen me since before my surgery and who were interested in what had happened, so I was replaying some of the darkest and most difficult memories. I absolutely understand their interest in me, and deeply appreciate that they want to know what happened and how I am, but I need to remember that this will wear me out. At least talking about what's happened doesn't make me upset, which it used to. This is probably partly because of the distance in time since it all started and also because, finally, I do believe I am in remission, so it feels like a new phase for me.

I've done quite a bit of socialising - with former colleagues from Tower Hamlets, with friends locally and with our neighbours, whose daughter (the doctor who stepped into the role of personal physician when my wound got infected!) was visiting with her very cute and eminently cuddle-able baby boy. I'm able to eat normally, have one glass of fizzy (lasting about three hours) and stay reasonably alert until about 11 pm, so at least I can feel that I am behaving less like a hermit!

I've also been doing a fair amount of exercise - Pilates, Zumba, aerobics, cardio-boxing (hilarious) and gym, with a bit of outdoor running thrown in too. I know I won't be running that much of the London Marathon, but I am working on being able to run bits of it and to build up the stamina to get round. I am less worried about the stamina now I have got several weeks of regular cv exercise under my belt. The Pilates is interesting, as the first class I went to left me feeling kind of "meh", but the second class somehow just clicked for me and I realised how beneficial a different kind of exercise might be for me.

My life sounds really boring, doesn't it? In reality, it feels anything but - it's a real novelty for me, after the past 9 months of feeling, for the most part, absolutely dreadful, both physically and mentally, to be feeling energetic, positive, healthy and interested in things that aren't connected with cancer or facial palsy. For so long, my outlook has been more of an inlook - I couldn't see outside what was happening to me and couldn't look outwards at the wider world around me. It's incredibly refreshing to be able to take part in community activities (like our Fairtrade Big Brew this afternoon - banana cake cooling on the kitchen counter as I type!) and to meet up with friends somewhere other than in my house. I can feel 'safe' in other places now.

I still have bad moments - had one the other day, when I just felt really despondent by my face and almost on the verge of disgusted at how rubbish I look. Sometimes I hate the thought that my poor family has to look at this lopsided face all the time - at least I only see it when I look in the mirror. My family and friends reassure me that it's not nearly as bad as I think it is, but I know what I think of it when I see it in the mirror. No amount of clever hair-styling or accessorising will disguise it. On good days, I can brazen it out. On bad days, I feel as if I am the most conspicuous thing in the world and that everyone must be looking at me and wondering what on earth has happened to make me look like this. That makes me more upset than the oncology side, to be honest, largely because the cancer seems to be more distant, in the past, whereas my face is very much here, now and into the future.

And then I think - isn't it better to have a lopsided face than to have my old face but a very limited life? Well, yes, of course it is. My rational mind tells me that. It's this irrational mind that chips away at me from time to time. It undermines my self-confidence in so many areas: driving, walking into busy places, public transport - just ordinary, everyday social situations become daunting opportunites for feeling socially inadequate.  I still do these things, but sometimes, if  I'm having a bad day, it's exhausting. I am lucky that usually I have good days, rather than bad, and sometimes I even find myself talking to people for the first time and not even thinking that I need to explain my appearance to them - that's good, because it means that I am feeling more comfortable, more accepting of what I look like.

 

I'm just tired of being tired, tired of feeling different (and not in a good way) and so weary at the thought of months or years before my face returns to anything remotely approaching symmetrical.  That's the time I need to go for a run or to do some exercise to make these demons go away. Thank goodness it works!

 

I shall end this post on a positive note - I've had a lovely day today, baking, drinking tea with friends, talking to people that I think might become friends, arranging to go for a walk on Monday - I even fulfilled my role as Amy's PA, taking my little list of chores with me into Oxted and ticking every single one off! Why do I even need to think about going back to work? Looking after her is a full-time job in itself :-)

 

 

 

 

 

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My week - it's been a good one!

So much for my resolution to update this blog regularly - a week has gone by since I last wrote anything!

It's been a week filled with exercise, really - after trying Pilates last Tuesday (not a raging success; I felt as if it was all a bit too slow and not active enough for me), Amy and I trotted off to cardio-box, an exercise class based on (yes, you're there already) boxing! After the warm-up, we did about thirty minutes of shadow boxing, repeating arm movements and bouncing on our feet, ducking, etc. It was all going so well till we had to move our arms in double time while keeping our feet at the same pace  That's when I got my feet and arms completely out of sync and ended up dancing in a vain attempt to copy the instructor and the rest of the class! At least it kept Amy amused, watching me pretending that what I was really doing was floating like a butterfly while stinging like a bee. We then worked our way round 10 stations, doing press-ups at one, tricep curls with weights at another,  sit-ups etc and as part of this, we got the chance to don the boxing gloves and hit that punchbag. I found it much easier to co-ordinate my hand and legs when I was hitting something (watch out, Neil, when I want to practise my moves!). By the end of the class, I really felt as if I had worked harder than in any other class I've been to.

Thursday brought the excitement of a replacement hose for my Henry vacuum cleaner (you can tell my world has shrunk somewhat when a bit of plastic tubing gives rise to such heady pleasure). I'd like to point out that nothing in the previous sentence is a euphemism, by the way. Inspired by this foray into domestic excellence, I decided to bake some teabread. I was commenting to Neil this evening that I really enjoy being at home because I feel so much better now - while I was at home for most of last year, bar the first few months, for much of that time I felt so dreadful and weak that I couldn't enjoy it properly. Now, feeling stronger each week, I am loving the chance to cook at a more leisurely pace, to keep on top of housework, to free up weekends to spend with Neil, to be able to go to the gym and exercise classes during the day, to catch up with people and generally not to feel everything has to be crammed into Saturday and Sunday. That's not to say that I don't want to return to work - I do - but not full-time, since I think I need this balance and not to be at work every day to keep me fit and well, not just physically but mentally as well. I can see how easy it might be to get sucked back into that long hours culture and end up undoing all the good I am doing myself by focussing at the moment on getting fit and healthy.

Our weekend was a very sociable one. On Friday evening we were invited over to our friends', the Dodds, for supper and an evening playing board games. What fun! We played Old Maid, Pit, Qwirkle (yes, I have spelt that correctly!) and Chase the Ace. I'd forgotten how much enjoyment there is in playing simple games, no computer or fancy games console involved. We enjoyed it so much that first thing on Saturday, I ordered us Qwirkle and Pit from Amazon so we can do more of this kind of stuff at home. I really liked playing cribbage with Adam over Christmas and playing Jenga etc on Christmas Day. What was especially nice for me was that the last time we were over at the Dodds' house, I had no appetite and was terribly tired, but this time I was eating properly and  had loads more energy, so we were able to stay until a respectable time (and I tucked away a respectable amount of food!).

On Saturday, our friends Steve and Gwen travelled up from their home in the New Forest to visit. Steve's back garden backed onto Neil's, so they have known each other since they were knee high to a beer bottle. We haven't seen them for a couple of years, so we had a lot of catching up to do. After lunch, we sat around chatting and, as often tends to happen, coming up with solutions to all the world's problems :-) They left in the early evening, which was perfect timing as I was aware that I would feel really tired the next day if I carried on talking for much longer (it's still the thing that makes me most tired, talking - ironic, eh?).

Sunday, after church, for some reason I started feeling a bit low. The sun was shining, so it wasn't weather-related, as often happens with me, so I think it was just a bit of a dip with no apparent cause. Neil spotted that I was a bit despondent and suggested I put my running gear on and went out for a run. After a bit of grumbling (I'll be too slow, I won't enjoy it, people will laugh, yada yada yada), I did as he suggested and went out for a run. I ran the same route I ran the previous week, didn't have any walk break and ended up shaving a few minutes off my time, so well done, Neil - you knew exactly what I needed to do, as I came home with a smile on my face and feeling much better. I am so lucky that I have found a medication that is totally natural and chemical-free - exercising helps me so much.

And so we come to Monday and the start of a new week. I popped next door to have a cuppa and a catch up with my neighbour and went into Redhill in the afternoon to sort out my mobile phone upgrade. I like to look at and feel the handsets, so need to go into the shop, not just do it online. One spanky new iPhone 4S and pair of trackie bottoms later, I returned home, a happy shopper. Legs, Bums and Tums with Amy last night as the first of this week's exercise classes - not sure I'm seeing much difference in any of those parts of my anatomy, but my stamina is good!

Today, Tuesday, I've spent a total of three hours at the gym, starting with an early morning session at half six with Neil. I had a really good, comfortable run on the treadmill and did lots of resistance work, squats, sit-ups etc. Later in the morning I had Zumba (always a feel-good class) and this evening I did Pilates. I'm glad to say that this evening I "got" Pilates - I felt much more at ease in the class and understood properly, not just conceptually, how valuable this kind of class will be to complement all the aerobic and active stuff I do. In fact, today, for the first time since last April, I almost managed to forget that I have been ill or that I have facial palsy. Apart from the fact that during some of the positions in Pilates I had to be careful of my shoulder and neck, I haven't been limited in any of the activities I've done today. I chatted to several people at Zumba and Pilates without feeling the need to explain (apologise for?) how I look. I think this is real progress for me and I hope tomorrow is the same. I do understand that it might not be as good as this every day, but just realising that I can feel like this at least once is really positive.

I am sitting here this evening feeling pretty good. I value the preciousness of life and the fact that I have a second chance at it. Maybe the realisation that I am in remission is finally starting to take effect. It may be that now it's starting to feel real and I can leave the limbo I have found myself in for so long. Whatever it is, I wish I could bottle it and then uncork it whenever I feel the need - and not just for me, but for others who need it. Wouldn't that be brilliant?

Breaking news - I am getting better at this running malarkey :-) Those of you who know me through Runners' World, and others who know me well, will know that returning to running has been a really important part of my recovery, marking quite a milestone. Apart from the psychological benefits of exercise, it's the return to normal that it represents which is so meaningful. I've been doing a little running on the treadmill at the gym this week; managed 20 minutes on Wednesday morning and 30 minutes on Friday morning. Today, it was such a beautiful wintry morning, sunny and cold, that after church I decided to go for an outside plod - my first proper attempt at running, my first time out on my own (apart from running around the block a few weeks ago) any my first run outside.

There's a process to follow when going for a run - for me, anyway. I'm sure most runners just throw on their running gear, lace up their trainers and head off but oh no, not me. First there is the dilemma of what to wear - layering is key when it's cold, but I don't want to get too hot so I need to think about whether to wear a sleeveless top under a long-sleeved one, or a short-sleeved top under a long-sleeved one, or a short-sleeved one over a long-sleeved one, or a ....well, you get the picture! Then it's whether to wear calf-length leggings or full tracksuit bottoms. Then it's the trainers - should I wear my lovely new ones and spoil their pristine whiteness with some muddy badges of honour, or should I wear some older trainers which have been through mud, horse poo and puddles? (I told you it's a dilemma). In the end, I went for the sleeveless top, long-sleeved top, leggings and older trainers ensemble. The mandatory hi-viz gilet (anywhere else, this would be called a sleeveless jacket, but we're in Oxted, darling) on top, thumbs tucked through the thumbholes of my sleeves, hair screwed back into a tiny pony-tail and phone placed in pocket and off I went.

Well, what a beautiful day to be out running! Clean, clear air, bright sunshine, muddy fields and wildlife - just perfect. I did one of my old running routes; it's about four and a half miles and I ran all of it except for one tiny bit where I walked. I ran all the uphills, though, which I was very pleased with. I had to manoeuvre round a recalcitrant horse, which was firmly placed right by the stile between two fields. No way was it going to move - there was a couple out for a walk, just in front of me, who were trying to persuade this horse to move, but he was having none of it. Another couple on the other side of the stile were also trying to persuade it, but to no avail. I got fed up (impatient? me? Nooooo) with the slightly ineffectual hand-waving and "Here, boy"s that were going on, so eventually I just said I thought I could squeeze between the horse's head and the stile and hopped over. I wasn't going to let a horse stop me doing this blessed run, no way!

Now I know I can run outside, I can do more of it - I know I won't be able to do any long training runs for the VLM, but if I can get up to about 8 or 9 miles over the next 7 weeks (eek!), then at least I will feel I have the ability to run parts of the course, even if I walk most of it. And do you know what? there's no shame in that at all, despite what some running purists say. For me, the important thing is just getting to the end and proving that I have put the past horrendous 12 months to one side.

The rest of the week, since I last blogged, has been busy and good. I met with another friend on Wednesday for a catch-up and to talk about work and she gave me some very helpful advice about developing our new charity. Straight home from meeting her (in London) and met up with my friend Di in Oxted. She had an operation on her feet a few months ago and between her being immobile and me not being 100%, we hadn't had a chance to talk face-to-face for a while, so we had a grand old chat over tea/hot chocolate/latte in Caffe Nero.

On Thursday evening, I ventured back to the Elders' meeting at my church. The Elders basically work with the Minister to run the church, and are elected by church members. I hadn't been along to the monthly meetings since I got ill, so this is another step towards normality. I timed my return well, because it was our church secretary's birthday and there was cake! It did feel good to be back and getting involved, especially as we have had so much support from people there.

We had a guest for the weekend - my friend Dave, who lives in Derbyshire. It was just too difficult for me to entertain the idea of entertaining (!) overnight guests all through last summer so, because it's a long way to come just for a couple of hours, we arranged for him to visit now, when I am so much better. He came down on Friday and left on Saturday afternoon, so we had ample opportunity for a good catch-up, putting the world to rights, reflecting on being middle-aged gimmers, etc.! He even had the opportunity to come with Neil and me to a meeting of the Head and Neck Cancer Support Group at Medway Hospital (it moves around between Medway, Maidstone and East Grinstead Hospitals). You might remember that Neil and I went to our first meeting of this group in December and we won the quiz. Guess what? Yes, we won it again!I do like quizzes and my competitive streak comes out big-time. We won a bottle of red wine and then won a bottle of white in the raffle, so those two bottles have joined the serried ranks of bottles in the dining-room, none of which I can yet drink, since all wine still smells like vinegar to me!

I think that's me up-to-date now. It's been a good week, catching up with friends, and I deeply appreciate them making the effort to see me, especially when it involves travelling some distance. Neil, Amy and Adam are all fine - spoke to Adam on the  phone this afternoon, Amy has been working hard over the weekend looking after one of her favourite charges so his parents could go away overnight and is now in bed, shattered, and Neil has spent today working at ExCel, where his company was exhibiting. It's good to have him back home, relaxing on the sofa and perusing the Sunday papers. As for  me, once I finish this blog, I shall settle back on the sofa, cup of tea in hand, and luxuriate in the Sunday night televisual delight that is Call the Midwife - perfect easy, but well-made, viewing.

Toodle pip, y'all

Great day out - then back to earth with a bump - or rather lump!

I posted on Facebook that I would blog about my Big Day Out yesterday so, as promised, here is the story of My Trip to London.

My friend from uni, Fin, had very generously invited me, along with two other uni friends, Gill and Ron, to go to a matinee performance of Ghost - the Musical and then for a Chinese meal. We arranged to meet in a pub near the theatre. I don't often go up to London for social events, although I have worked in London most of my working life, so I always feel a bit like the country mouse come to town when I go. I also hadn't been to London on my own since the summer, when I had to go to two hospital appointments in London. I've been up twice in the evenings for social events, both times with Neil, so this was going to be my first time using public transport late at night on my own. Even earlier this week, I balked at the thought and indeed, I cancelled going to a meeting in London on Monday early evening, largely because I still felt uneasy at the thought of being on a train with loads of people. However, my trip to Bluewater gave my confidence a boost and I felt perfectly able to cope.

The journey to London was fine; I negotiated the train and tube and found the pub without too much difficulty, despite my inability to look at a map and figure out which way I need to go. I was the first to get to the pub, although Fin arrived about two minutes after I did! Ron arrived later and Gill couldn't get away from work until a bit later, so Fin and I had the chance for a wee catch-up. His lovely wife Anne, who was also at uni with us, died of cancer just over nine years ago, so he is sadly familiar with what it feels like to be riding the cancer train and we shared some experiences and feelings. I found it really helpful to talk to someone who's been there and knows about the uncertainties and worries.

However, the day was about old friends getting together for a good blether, so we didn't dwell on it and didn't get maudlin. This was a day for reminiscing and enjoying each others' company. It was strange (in an amazingly happy way) how the years rolled away and suddenly it felt as if we were all 19 again, learning how to be independent, form our own opinions rather than reflect our parents', making mistakes and having fun. Isn't it great when that happens and you pick up from where you left off so easily?

We met Gill at the theatre and Fin arranged for us to have a glass of champagne before the start of the performance - I love the way you can get plastic champagne flutes now and can take your drink into the auditorium, because just as we sat down to sip our drink, the five minute bell rang! In we trotted and took our seats - and what great seats they were! We had a perfect view of the stage, close enough to see everything but without having to crane our necks upwards. The show was amazing - if you've seen the film Ghost, you will know the story - and the musical is faithful to the story but obviously injects a lot of song into it. And what songs! - the music is superb and the singing was excellent. The two young leads were completely convincing (the male lead, Richard Fleeshman, had played Craig Harris, Rosie's goth boyfriend, when he was but a lad) and the Oda Mae Brown/Rita Miller character was brilliant. The special effects were incredible - the sets changed quickly, taking you from the loft apartment to a busy banking office, to the New York subway, to a city street, with the most effective lighting. All in all, a wonderful production which had me laughing one minute and in tears the next. There was a standing ovation for the leads, who were doing their last two London performances yesterday before transferring to Broadway.

Fin had arranged for champagne during the interval (we had to use plastic flutes again as we didn't finish it before the second half bell rang and we were determined not to leave any in the bottle!) and, as if all this weren't enough, he also arranged for us to go backstage after the performance and meet the cast leads. They were so friendly and happy to chat to us for a few minutes, even though they had an evening performance to prepare for.

This day out was turning out to be pretty amazing! We adjourned to the Criterion restaurant where we had a bottle of Bollinger - I felt like Patsy from AbFab but without the beehive and drug habit. Oh, and minus about eight inches in height! So actually, not that much like her, now I come to think of it! The Criterion was an oasis of calm in the midst of the bustle of London - in fact, it reminded me of being in a place like Cafe Florian in Venice, or a traditional coffee-house in Salzburg. Then off to the Chinese restaurant for a veritable feast. I stuffed my little belly to the brim - and yes, there was more champagne!

We had a great catch-up: lots of "whatever happened to....?" and a bit of Google searching to try and find out! With all four of us being Scottish, we had a good old grumble about declining standards of spelling and grammar - oh yes, our inner pedants were proudly outed!

Last trains beckoned and we had to bring the evening to a close and make our ways home. Arm in arm, we trotted down to Embankment station and said our farewells (Ron and Gill are married, so set off together on their long journey home, Fin lives within walking distance of Embankment and I had to get to Victoria and catch my train)with promises to meet up again soon. My lovely husband Neil came and met me at the station so I didn't have to walk up the road on my own in the dark (I've done it loads of times on my own before but there's still a bit of self-confidence I need to refind).

Our friend Fin literally treated us to the whole day and wouldn't let any of us even buy a drink - thank you, Fin, for your wonderful kindness and generosity. Being with old friends from those formative and special years was a real privilege and we've decided we need to start putting dates in the diary for us to meet again so we actually meet on a more regular basis.

After such a positive two days, I woke up this morning feeling pretty good. I had my usual monthly check-up at the Marsden and was anticipating that everything would be fine, as it has been the past several visits. When I was making the appointment in December, the receptionist asked if I was okay with it being Friday the 13th... "Yes, of course," I replied. Cue a hollow laugh.....

First off, Adam was supposed to come with me and then we were going to do a bit of shopping. He had gone down to his friend's place in Brighton yesterday and was driving back this morning in time to come with me to the Marsden. At half nine, he called to say he was on the motorway with a flat tyre and no jack! Luckily he is in the AA and was able to get them to sort him out, but he wasn't back in time to go with me to hospital so I had to go on my own - which, under normal circumstances, would have been fine. I was planning on going to Ikea afterwards to check out some wardrobes for Amy's room, so my day was pretty much planned.

I saw my consultant, told him I was feeling good, was back at the gym, planning on doing the London marathon, etc etc. I wanted him to check that there wasn't any inflammation hanging around that might compromise my PET CT scan next month, so he had a look inside my mouth, under my tongue, down my throat etc., and pronounced that everything was looking good. Then he did an external physical examination and pushed and prodded my neck. Then he pushed and prodded a bit more...and a bit more.....and then said "Hmmm, there's a lymph node there that feels a bit soft. I think we'll get that looked at so let's just arrange an ultrasound scan, today if we can. No need to worry." How often have I heard those words since I first noticed those lumps on my jaw last March? Far too often. And do I believe them? Actually, no. Experience teaches me that there is usually every reason to worry.

I was slotted in as an urgent ultrasound, which meant waiting for a couple of hours until the radiologist had an opportunity to see me in between patients with booked appointments. I really appreciate the doctor making the time available to see me (being a polite little person, I did tell him this). The consultant had said that the radiologist would take a tissue sample if he thought there was anything to be concerned about and that, in any case, the ultrasound would be discussed at the MDT next Wednesday, so I had to make an appointment to go back next week, which feels like - and indeed, is - a backward step, going back to weekly check-ups.

You can imagine the state of nervousness and anxiety as I lay on the bed, watching the radiologist peering intently at the screen as he moved the probe over my neck. "Turn your head this way, please." "Now this way." "Now this way again, please". Just as I was waiting for his next words to be "I need to take a fine needle aspiration now", he said the sweetest words I could have heard - "I can't see any mass, so no need to take a sample. It all looks fine to me." You can imagine the sense of relief I felt.

I left the hospital and phoned Neil as I walked to the car park to let him know what had gone on and that's when it hit me. I got a bit weepy, largely out of relief but also the sad recognition that this is what it's going to be like from now on...any lump, unexpected bump or ache and it will have to be checked out, with that constant feeling of dread that it's going to turn out to be bad news. There's no real escape from this disease - it may recede to the back of my mind, but it's always there, worming its way to the front from time to time.

I think that it hit me harder today because the past couple of days have been so positive and forward-looking. However, I coped with being at the hospital on my own, waiting for the scan on my own, hearing the doctor's opinion on my own, so I'm stronger than I maybe thought I was. I'm not sure I would have coped with it a month or two ago without getting worked up and upset immediately the consultant spotted something a bit unusual.

So, back to the reality of living with a cancer dx. There it is, whispering away in its nasty, evil, sibilant way.... "Just when you think it's all going your way, just remember I'm sitting here in the background and I might just come back for another little visit." Well, nasty cancer, you can just stay away from me because I don't want you back!